Article: Coalition4ME/CFS Puts Out Call For Action on DSM-5 Proposal

I've just written to Dr William Narrow (DSM-5 Task Force) requesting that the Task Force extend the review period by at least two weeks until the end of June, citing a number of factors in addition to the site going down, that will have caused professional stakeholders and patient groups to have been unprepared for this brief May - June 15 review period.

In order to submit, one first needs to register via an online registration form.

A name, email address and country are required. Then an auto generated email is sent out with a temporary password. The password and registration email address are required when logging in to comment. Once logged in, the comment box is displayed at the foot of each category criteria page.

The system probably logs IP codes, too, as many sites do, when the registered account holder logs in and uploads their response. So for each response, a registered email address, a password, a name and a country (and probably the IP of the machine being used to upload) is recorded.

Multiple letters emanating from the same IP or IP range might be monitored.

Of course any system is open to abuse.

I'm not sure what your point is.

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My point was, whether we can compose one letter and have it signed by many patients since it is too much for some to
do it on their own. I was told that it wouldn't work because how would they know that these names who signed were real?
I said what is the difference if it's individual letters, they till don't know if the names are real but, you answered my question that we each have to register individually in order to submit a letter.
Thanks for clarifyinfgthat issue.
Nieelk

My point was, whether we can compose one letter and have it signed by many patients since it is too much for some to do it on their own. I was told that it wouldn't work because how would they know that these names who signed were real?

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Yes. I had cautioned against a petition, ie, one person registers to submit comment and uploads a comment or letter which appends a list of (unverifiable) signatures.

I said what is the difference if it's individual letters, they till don't know if the names are real but, you answered my question that we each have to register individually in order to submit a letter. Thanks for clarifyinfg that issue.

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Yes, that's correct. Registration is required and on completion of the registration form, an auto generated email is sent which contains a password (which can be changed). It is then necessary to log in with the email address used to register and the password.

Last year, I submitted two comments, one for the Somatic Symptom Disorder Work Group via the CSSD page, and some comment on the development process and the review process to the Task Force. It is possible to submit more than one comment.

Again, my preference would be to submit an individual comment, or to personalise a template letter by summarising or perhaps quoting a couple of passages, or to include quotes from or summaries of the submission of one of the patient organization submissions that has been placed in the public domain. My submission last year was an individual comment but also included a quote from the published submission of the UK 25% ME Group and also a quote from a US patient organization.

But note that I am not discouraging the use of template letters but expressing personal preference.

The DSM-5 Development website is back up again, this morning (8.45 am UK time).

Last year a flurry of patient organization submissions were placed in the public domain in the last weeks of the review period and I think this helped to encourage patients to submit themselves or approach professionals to submit.

This year, to the best of my knowledge, so far, only the submission of the Coalition4ME/CFS has been published.

Out of the UK and international organizations that I have contacted, only Action for M.E. has confirmed that it intends to submit. I was told by a representative of CFIDS, a couple of weeks ago, that they are considering whether a response is warranted, this year.

The site was down for 8 hrs that I know of. See the time stamps on my post to glenp (#39) then subsequent one to you reporting it was still down

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Thanks ISO, that's a long time for a site to be offline. Given that the APA had brought the date of the review period forward but given no prior warning of their intention to do so, had shifted its earlier schedule of May - June 30, to August - September 30, but then back to May, though only to June 15, I think an 8 week review period, at least, would have been appropriate and that they should at least have kept the review period open until the end of the month.

Last year's was around ten weeks long. Some of the points I had made, last year, to the Task Force under "Overall comments":

"I would like to raise the following points in this Overall Comment section:

"I welcome the decision of the Task Force to extend the submission of responses to preliminary draft revisions to the lay public as well as to APA members, clinicians, allied health professionals, researchers, administrators and other end users, and for the Task Forces recognition that patients, their carers, families and advocates and the patient organisations that represent their interests are crucial stakeholders in any consultation process. Their input merits particular consideration given the absence of patient representation within the individual Work Groups.

"Professionals within the field will have been alerted to the public review process well in advance of 10th February; some specific patient groups will have already been interacting with relevant Work Groups with the opportunity of informing the revision process prior to the release of draft proposals. But whilst those patient communities with organised and vocal advocates will have used the internet and other channels of communication to alert their interest groups there may be many patient groups for which awareness of the DSM-5 development process and the opportunity to review proposals and submit responses may have taken a while to come to their attention.

"Additionally, patient representation organisations would have benefited from more time in which to consult with external advisers and their own members, following the release of proposals, in order that the views of their members might be sought to inform their responses. This is particularly relevant since from 2007, when the Work Groups were formed, just two progress reports have been published by the various Work Groups, which in many cases have been notable for their brevity and lack of detail.

"Some Work Groups, for example, the Work Group for Somatic Symptom Disorders, have published reports and editorials in subscription journals which have discussed and expanded on the proposals in the brief progress updates. But these journal reports, editorials and commentaries have not always been readily available to those outside the field and without journal paper access.

"It would have been helpful, for example, if the publication of the free access Editorial: Dimsdale J, Creed F: The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV a preliminary report on behalf of the Somatic Symptom Disorders Work Group in the June 09 edition of J Psychosom Res, 66 (2009) 473476 could have been noted on the Somatic Symptom Disorders Work Group Progress Report page for wider dissemination.

"I consider that the period for public review should have been at least a full three months in order enable better participation by patient interest groups.

"It is understood from the current DSM-5 Timeline, that the next opportunity for public review will be during May - July 2011, when revised draft diagnostic criteria will be posted online for approximately one month following the internal review, to allow the public to provide feedback.

"For the reasons above, I suggest that the Task Force gives consideration to extending this beta review period from one month to at least two months..."​

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What we got for this second review is no prior notice, a submission period of only six week duration and the DSM-5 Development website down for much of Saturday, June 4.

ETA: Please also draft your response offline and save a copy before uploading, as uploading editors can be glitchy and a dropped connection or a page failing to load might result in the entire comment being lost.

Last year, the following auto generated receipt was being sent out after successful upload of comments; I can't confirm, as I haven't submitted yet, but I imagine receipts are also being sent out this year. Perhaps someone could confirm, please?

We appreciate your comments and recommendations for the proposed DSM-5. The APA will be unable to answer each contributor on an individual basis. However, all comments will be reviewed, aggregated by topic and shared with the appropriate DSM Work Group(s). Responses will be reflected in future DSM-5 revisions and justifications for such revisions.

The comments you have submitted are as follows:

In response to: Overall Comments

From: Suzy Chapman, UK resident

Capacity: Patient advocate

Contact: suzy.chapman@XXXXXX

[Followed by a full copy of my comment]

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The APA has reported receiving of over 8000 comments in last year's stakeholder review exercise. No figures were released for the number of letters received by each Work Group, but in one media report (which I don't have to hand), a spokesperson for the Task Force had listed which categories had received the most letters.

Also included in my comment submitted, last year, under "Overall Comments":

"My experience of participation in previous consultation exercises has been limited to formal consultation processes where stakeholders have been required to register an interest, where responses to a draft or consultation document have been acknowledged and where, in some cases, there has been a commitment on the part of the document development group to respond publicly to responses received.

"I acknowledge that the Task Force has had to balance opening up the draft proposals review process to a wide range of stakeholders against conducting a more restricted consultation process in which responses are acknowledged, recorded and responded to.

"It is, however, disconcerting for both professionals and the lay public to tender responses into which considerable effort may have been invested where there is no real understanding of how those responses are to be collated, considered and used to inform any revisions to the drafts prior to the commencement of field trials and with the knowledge that their comments and concerns will not be visible for scrutiny by other stakeholders.

"Does the Task Force have any plans to publish summaries of the key areas of concern brought to their attention via the public review process for each of the Work Groups proposals and to publish Work Group/Task Force responses?"​

APA Closes Public Comment Period for Draft Diagnostic Criteria for DSM-5

DSM-5 Work Groups to Review Comments

ARLINGTON, Va. (April 20, 2010) The American Psychiatric Association received 6,400 comments on a draft of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders during a 2 month public comment period, which ends today.

This period of public review and comment of diagnostic criteria is unprecedented in both the field of psychiatry and in medicine, said Alan F. Schatzberg, M.D., president of the American Psychiatric Association. It demonstrates the APAs commitment to an inclusive and transparent process of development for DSM-5.

The criteria have been available for comment since they were published online on Feb. 10. The draft criteria will continue to be available for review on the DSM-5 Web site, www.dsm5.org, and updates to the draft will be posted on an ongoing basis. The public will have another opportunity to comment on the criteria and any changes after the first round of field trials.

A number of clinicians, researchers and family and patient advocates participated in the public comment period, contributing more than 6,400 comments on various aspects of DSM-5.

All comments submitted via the Web site were assigned to a topic-specific expert from one of the thirteen DSM-5 work groups for review. In their review, work group members will note submissions that need additional consideration from the work group as a whole. Upon evaluation from the entire work group, draft criteria may be revised.

For example, the Eating Disorders Work Group has proposed additional revisions to criteria for Anorexia Nervosa and Bulimia Nervosa based on comments received.

The goal of DSM-5 is to create an evidence-based manual that is useful to clinicians and represents the best science available, said David J. Kupfer, M.D., DSM-5 Task Force chair.

The comments we received provide the task force and work groups with additional information and perspectives, ensuring that we have fully considered the impact any changes would have on clinical practice and disorder prevalence, as well as other real world implications of revised criteria.

Most of the comments that were submitted were diagnosis-specific, while nearly one-fourth were general. Distribution of the comments varied across the 13 work groups.

The work groups with the largest number of submitted comments include:

Neurodevelopmental Disorders Work Group (23% of comments)

Anxiety Disorders Work Group (15% of comments)

Psychosis Disorder Work Group (11% of comments)

Sexual and Gender Identity Disorders (10% of comments)

Following a review of all submitted comments and possible revisions to the draft criteria, the APA will begin a series of field trials to test some of the proposed diagnostic criteria in clinical settings. The proposed criteria will continue to be reviewed and refined over the next two years.

Last year, the UK ME Association did not consider that the DSM-5 proposals warranted a comment on behalf of the organization and no comment was submitted by them on behalf of their members.

Dr Ellen Goudsmit, who did a stint, last year, as a psychological advisor to the MEA for the purposes of the PACE Trial, has recently stated on the publicly viewable ME Association Facebook site that last year, she had advised the MEA against making a submission.

The ME Association confirmed to me, last year, that it was endorsing a submission made by Dr Goudsmit.

The MEA was reluctant to place a copy of the submission it said it was endorsing in the public domain, and no full copy had been placed in the public domain, either, by Dr Goudsmit.

Eventually, Tony Britton did place a copy on the Wall of the MEA's Facebook site, but to the best of my knowledge, no copy was ever published on the MEA's main website.

Following a further request that the MEA clarifies whether it intends to submit, Dr Shepherd has posted the following on the MEA's Facebook Wall, this morning:

Charles wrote: "...My top priority at the moment is a number of issues relating to new research projects being funded by the MEA, including the biobank, but this issue is on my list for next week. It should, however, be noted that the views of UK charities are not going to have very much infleunce (if any) on the American Psychiatric Association." ​

Dealing with some of our UK patient organizations is about as much fun as gnawing off your own arm.

Last year, included in the SSD Group's disorders descriptions was the following reference to "double" vision in one eye:

'...The symptoms may or may not be associated with a known medical conditionThe symptoms sometimes represent normal bodily sensationsor discomfort that does not generally signify serious diseaseor are incompatible with known pathophysiology (e.g. seeing double with one eye closed).'​

Last year's submission by the UK 25% ME Group was prepared by Margaret Williams and Prof Malcolm Hooper. It included the following observation on the above:

'For the avoidance of doubt, seeing double with one eye closed is not incompatible with known pathophysiology; it is known as monocular diplopia: a false image occurs if, through misalignment, the image falls on the periphery of the retina; it may also be attributable to axial lens opacities, to pterygium (thickening of the conjunctiva over the cornea), or to xerophthalmia (dry eye). It is discouraging to learn that the psychiatrists charged with the task of accurately describing the proposed category of CSSD ascribe recognised ocular pathology to cognitive distortion.'​

Following the stakeholder review, this reference to "double" vision in one eye was removed from subsequent versions of the key documents that accompany proposed DSM-5 criteria. I cannot confirm whether the APA received other criticism on this specific reference to ocular "somatic symptoms", in addition to that submitted on behalf of the 25% ME Group, but I don't altogether share Dr Shepherd's pessimism that the APA would not be influenced by responses from UK patient organizations.

For those who are not aware, the "Somatic Symptom Disorders" Work Group is predominately comprised of US clinicians/researchers from the fields of CL psychiatry and psychosomatics but also includes a Chinese clinician (Prof Sing Lee) and UK Professors, Michael Sharpe and Francis Creed.

Someone should tell people like Shepard that its 2011 and that with advances in media and associated technology that it is acknowledged we live in a global village. That attitude is pre historic....and those in positions of leadership, who believe
their contributions would not be meaningful or influential for such reasons, should not be there. I am sorry but it sounds like a very bad excuse.

I am sure though he will not be the only one using it. I would expect a similar response from orgs here in Australia. Yet if this goes through and affects us as patients, I am sure they will be moaning and protesting....but by then it won't be constructive and their efforts will be a complete waste

It operates in respect of all organic illnesses as well. So in addition to your existing diagnosis be it CFS or cancer for example, they can give you this additional one as well. It will attach to or bolt on, to your diagnosis.

The rationale goes along the lines that just because you have cancer does not mean that you won't have

*one or more symptoms that cause distress and interfere with your daily activities
And have two of the following

* high level of anxiety concerning your health
* disproportionate and persistent concerns about the seriousness of your symptoms
* excessive time and energy devoted to the symptoms Or health concerns

AND this continues over a period of more than 6 months.

Who ..having cancer, or any illness for which there is no cure and death is a serious possibility, would not have a relatively high level of anxiety about this and want to do all they can to live? Would not anything less be regarded as a deviation from the norm? Yet under the existing CSSD in this example, it will be reversed! Are we all meant to go quietly and compliantly to our graves?

The real question for the purposes of the operation of the CSSD is, what is a normal level of anxiety in regard to the illnesses being considered and how can this be objectively measured?

In fact, you could say that at its heart it asks us to seriously put to the psychiatric profession what is normal and what is pathological and to demonstrate this with reference to scientific literature....not some criteria that would arbitrarily expand the notion.

The danger with CSSD in it's current state for cancer patients as an example..... would be that those who chose to investigate non main stream approaches to treating cancer might be thought to be devoting excessive time and energy to their health, rather than just taking their chemotherapy and doing what they are told by a patriarchal system that knows best. This of course might equally apply to PWME CFS who are told to do their graded exercise and CBT!

The wide drafting does not only apply to CSSD, in the Somatic Symptom Disorders category...but also to many others. So much so, that there have been comments that it will dramatically change the way clinical psychiatry is practiced.

This has led to some commentators suggesting if this is a thinly guises attempt at trying to psychologicalise main stream diseases.

This one is more slippery. I don't know yet how to state what's bothering me, the scenario I see is that patients with difficult to diagnose illness or patients with weak or confusing biomarkers will be seen as responding to something that isn't there, with the result being they are placed into this category. IOW, lack of strong biomarkers equals imagined illness equals inappropriate anxiety.

This one is more slippery. I don't know yet how to state what's bothering me, the scenario I see is that patients with difficult to diagnose illness or patients with weak or confusing biomarkers will be seen as responding to something that isn't there, with the result being they are placed into this category. IOW, lack of strong biomarkers equals imagined illness equals inappropriate anxiety.

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Hi Andrew

You are correct. Psych sees syndromes as functional somatic syndrome disorders. That is, there is a group of syptoms that cannot be explained by medicine (medically unexplained symptoms MUS) and of course psychiatry believse that all these symptoms are somatic (of the body and are real in that sense), they are not due to disease of physical dysfunction but arise due to dysfucntion of the mind. Hence the Wesley School et al pushing CBT. So there is nothing new there.

I think your concerns are valid though. Where medical tests turn up little, patients are then more vulnerable to a psych diagnosis and what will be a CSSD diagnosis under DSM 5. Also consider the experience of most people who have a CFS diagnosis and their negative encounters with the medical profession. A medical attendance can generate its own anxiety, which might be mistaken for anxiety about symptoms subsequently being reported to the doctors.

That is a valid and legitimate complaint to make in a submission as CSSD relates to persons with ME CFS.

From my reading, it suggests that these reforms have lowered the diagnostic thresholds. That is of a concern, because it means that more people will more easily fit the criteria.

So we move from a position where people who are at the moment regarded as mentally healthy, will not be regarded as so, simply because they are now being caught under the operation of lower threshold

As to what is bothering you, could it be the very existence of a branch of medicine that can define these illnesses in arbitrary and subjective ways without hard scientific evidence?

If so, you would not be alone and of course this is what isolates the psych group within its own profession. It is viewed rather poorly by physicans for this reason.

Even within psychiatry itself, they acknowledge that the cause or origin of somotaform disorders is generally not understood*. Further the stats as to prevalence on somatoform disorders fluctuates from 0.4% in the population up to 35%. The variation in the stats appears to be based on different studies on the differnet somatoform diagnostic definitions. The lower the threshold, the more people that fall within the category and of course, the higher the prevalence stat.

So we have somatoform disorders which are:

* illnesses the psych profession state that they know little to nothing about when it comes to causation or origin ie they dont know how the mind operates to manifest these symptoms (medically unexplained symptoms)

* the prevalence of this illness seems to be directly related to how widely or otherwise the diagnostic criteria is drafted (because there is no objetive scientific test or biomarker for this illness to determine this)

One of the reasons given to lump all the existing somatoform diagnoses into CSSD was because they shared the common element of having MUS.

Paradoxically however, they want to exponge this term from the diagnostic language because they say the term is not helpful.

They say that the term ''medically unexplained symptoms'' (MUS) causes confusion for patients (they mistake this as meaning medically undiagnosed) and also creates a duality between mind and body, which is no longer accepted in medicine (well at least not in their branch)

Ironically, they want to exponge this term - even though they are attempting to define an illness, which within their own taxonomic principles they acknowledge is medically unexplained to psychiatry.

So it goes like this:

''We are dealing with a whole lot of symptoms in these people, that has no cause or explanation to be found in general medicine. Their symptoms are real bodily manifestations, but mainstream medical science says there is no explanation as to why these people are experiencing them. So these are medically unexplain symptom illnesses (MUS) which we have defined and called somatoform illnesses.

However, even though medicine does not have the answer for these MUS - we do. We believe the mind creates these symptoms. Of course we have no proof of that. We cannot show how the mind causes these MUS to manifest. It is only a hypothesis or a theory. But it is an answer. Of sorts. So, what we have here, is MUS illness that is also medically unexplained to psychiatry. Even though we have used MUS to create this illness classification and the proposed CSSD, we do not find the term MUS very useful''.

It all seems a litle bi polar to me

The somatoform disorders being proposed to be bundled into CSSD have always been controversial.

The debate around these for DSM 5 has been wide wranging from retaining them as a psychiatric diagnosis to abolishing them completely*

We wish to express concern over your new classification of Complex
Somatic Symptom Disorder.

Chronic Fatigue Syndrome has commonly been mistaken for a somataform
disorder. There are concerns in the UK that it may now be allocated a
place under the umbrella of Complex Somatic Symptom Disorders.

In the UK the term Myalgic Encephalomyelitis has been used for half a
century to define a potentially severe and chronic multi-system illness
triggered commonly by the enterovirus family, of which a key symptom is
post-exertional malaise. This name is still in use by the UK Government
alongside CFS (as CFS/ME) and it received a categorisation from the WHO
under neurological conditions many years ago, before the term CFS was
invented.

Enough confusion has already been caused by the unhelpful invention of
the name Chronic Fatigue Syndrome under which ME then became trapped.

Any possibility that classic ME, already subsumed under CFS, could be
mistakenly classified by default as a Complex Somatic Symptom Disorder
would be nothing short of disastrous. It would also be a scientific
error of some magnitude which would surely be best avoided for your own
sakes as much as that of the patients.

We would be grateful to receive an acknowledgment of our submission.

Best regards,

Jane Colby FRSA
Executive Director
The Young ME Sufferers Trust

Holder of The Queen's Award for Voluntary Service:
The MBE for Volunteer Groups

So that's a stated intention to submit from UK Action for M.E. and also from the UK ME Association; submissions already made by UK MEFreeForAll and UK TYMES Trust and a submission and "Call to Action" from the Coalition4ME/CFS.